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Myxoid liposarcoma in right thigh

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Posts: 6
Joined: Oct 2004

Oct 27, 2004 - 10:04 am

Hello,
My husband was diagnosed with myxoid liposarcoma on September 10, 2004. He travels alot, and found a lump on his thigh (size of a small lemon) when he was in indonesia on July 4th. Upon returning, he showed it to me, and I made an appointment the following day for him to see the doctor. The doctor refered him to a specialist (sports & medicine). They did several tests, to include MRI's, CT, X-ray, ultra sound, followed by a biopsy. The biopsy came back as a benign myxoma. My husband was given the option to remove it or leave it. Looking back, thank God he made the decision to remove it. As we now know, nothing is 100%, and we were told that after two biopsies, this was indeed a malignant tumor. My husband is now being seen by a wonderful team at John's Hopkin's Hospital in Baltimore. He had surgery on October 8th, to remove the margin (very wide excision). We were told two weeks ago, that the results of an extensive biopsy showed no sign of residual liposarcoma. He is still recovering from the surgery, and is scheduled to receive 35 rounds of radiation in a few weeks. We have also met twice with an Oncologist, yesterday being the second time. However, that meeting did not go well. The first meeting he told us that chemo really has not shown to be effective for this type of cancer. He gave us some figures to think about, and told us to come back after the surgery to discuss our options. Yesterday we went and saw him again, only to find out the the figures have changed since we last met. The first time we met, he told us that this type of cancer has a 20-30% chance of going elswhere. Yesterday that number was increased from 20-30% to 30-40%. This really disturbed me. He also told us that if my husband did not do it now, and it returned in the future, basically that would not be a good sentence. He told us at that point there would be no hope, and they would just try and buy time or so to speak. Could he have been just a little more negative!!!! I am very upset with this doctor, and have decided to get another opinion. We have two small children, and are in our mid 30's. Never did I ever imagine we would see something like this. I am very scared and am having a difficult time dealing with all of this. I would like to chat with someone who has been diagnosed with this type of cancer. Did you opt for radiation only? if so, how long has it been? has anything else showed up? As you can see, I am deeply lost. Mike is my best freind, and I just can't imagine this journey without him. Any information would be greatly appreciated.
Rhonda
spouse-diagnosed with myxoid liposarcoma in back of right thigh, stage 2 (chemo doctor said 2 or 3 does not make a difference, so you might as well say stage 3!!!) Located right under the skin (not deep) which they said was very rare.

I was diagnosed with liposarcoma in 1999. I too talked with 3 different doctors and was told that cheom for this type of cancer hasn't been studied because it is a rare form of cancer. I was told chemo probably wouldn't help that much. After talking with my surgeon again and after 2 months of agonizing over what to do, I Opted not to have any chemo. It has been 5 years this month since my diagnoses and I've only had a small basal carcinoma on my neck which has nothing to do with the sarcoma. I am 52 years old and healthy. My doctor told me I'm not out of the woods yet, but usually the sarcoma shows up by now if its going to. I also know of one other person with this type of cancer that had it at age 18 and she is in her forties now and is very healthy. There is hope. I know this is a very difficult time for both of you and with lots of prayer you will make the right choice. My best to you!!

Thanks so much for your reply!
I do have a couple of questions if you don't mind sharing. What location was your sarcoma in? was it diagnosed as a myxoid liposarcoma? Was it a large tumor/deep? My husbands tumor measured 7.7 x 6.5 x 2.2cm. They said it was superficial, and graded it at 1-2 of 3 or 2 of 4, not sure what all this means. It has been very overwhelming with all the decisions we have to make. This whole chemo thing is really scary. The Oncologist said they would put him on MAID?? this is the only one they would recommend for this type of sarcoma. But once again, there are no gurantees that this will even work. It seems like so much to go through when the studies done, have not even shown if it works. It think they gave a percent of 20% out of 100 people will be cured. Did you have any radiation for this? if so, how many treatments did they recommend? My husband has been told it would be 7 weeks M-F. What state were you treated in? did you see a specialist who dealt only with sarcomas? My husband is currently being seen at John's Hopkin's Hospital (we reside in Northern Virginia, and drive 2 hours to each appointment). Sorry for all the questions :-) I appreciate any info you can provide.
Rhonda

I'm not even sure if you will get this, but i need help. My little brother (37 at the time) had a tumor on his right thigh 2 years ago (5 pounder). He underwent radiation and they surgicaly removed it June 2011. The cancer is back, in his lungs and chest. There are 7 tumors that were discovered 3 weeks ago. (Sorry if I'm babbling, but I'm just lost) He has no health or life insurance. He lives in Montana and gets treatment at the Huntzman Center in Salt Lake City, while I live in Maryland. He's been single for years, and our parents have passed, so basicaly I'm it! I saw the words Metastatic Myxoid Liposarcoma for the first time today (I knew it was cancer, first time it had a name). He is getting his pick line inserted Monday. the chemo they have chosen is Ifosamide and Adriamyacin. I feel like the most useless helpless "sissie" on the planet. I've read more about this than i care to admit. i am flying out for his chemo and also to sign his POA, etc. What am i doing? What do i need to know? i don't even know what to ask you, other than can you help me get through this? Thank you more than words. Jeannie

Hi Jeannie, I am sorry that no one has responded to you until now. I do hope that your brother is still with us, fighting the good fight. I had a similar diagnosis in 2007 when I was 23, and also had multiple recurrences that had metasized to my lungs. I was also treated with Ifosfamide with Mesna, and for the most recent reccurence I had gemcitabine and taxotere and doxil.I've had my lung removed, but thank god am now 4 years in remission. Please let me know if you want to connect or if you just need to talk with someone.

sorry to hear about your husband's lipo. it is indeed a scary ordeal to go thru. my daughter's was in her left thigh and was deep behind the femor muscle. they took the femor muscle along with nerves. hers was also myxoid-round cell type 2. it was 6lbs. she then had 7 weeks radiation. that was 9-2003. she had surgery to insert the rod 10-27-2004. her femor was destroyed by the radiation. the rod is to insure she wouldn't break it. along with the cancer shehas no insurance so that is another monster. we are lucky we love and trust her doctors completely. it has been very painful and she lives with daily pain due to nerve damage. she has mri's to check for recur but so far none . thank god!! please educate yourself as much as you can on liposarcoma but DO NOT listen to statistics. he is not one! just stay strong (easy for me to say)
it consumed me. there is a web site called ACOR that is very informative. you must join the group but it is very easy. the people and information are wonderful. i will think of you and your family often. please email me at dyana123_2000@yahoo.com anytime. take care and stay strong.hugs dyana

Just found your posting today. I just returned to my surgeon after a wide excision of a pleomorphic liposarcoma in the fatty tissue of my left inner thigh. It was there for almost a year before I insisted that it be removed. The first surgeon performed an excisional biopsy and removed the tumor which was about the size of my thumb. After the pathology report revealed the cancer, I went to the James Cancer Center at Ohio State where Dr. Gary Bos, the head of the department did a wide excision (about the size of two hands end to end and 3cm thick) Since the second pathology report came back with no finding of additional cancer, we are going to go to 3 month checkups for metastatic lung tumors (I'm clean there now as well). He doesn't think that any radiation would have benefits that would justify the damage and tells me that no chemotherapy has been shown to be truly effective. I'm recovering from the surgery well and plan to keep living until I'm old. The Doc says that if I make it past 2 years with no recurrance, I'm probably home free. Get a second opinion and look this sarcoma up. Educate yourself, it really helps when you see these guys if you have intelligent questions to ask them.

Thanks for your reply. I hope that all is going well with your daughter, and will pray that she has a full recovery from the surgery. My heart goes out to her and the family. She is one lucky girl to have such a courageous Mother. Our family has also been blessed with an amazing Mother-in law. I honestly could not do this without her.

Almo- Hope all is going well for you. My husband is now back at work, and his leg seems to be getting better each day. The doctors also did a wide excision. Right now they are just waiting until the excision heals, and then they will start 7 weeks of radiation. May I ask what stage or grade your tumor was? was it deep? My husbands tumor was superficial, but that still does not mean anything as the size of it was large. I am just curious, as we are still unsure about the whole chemo thing. Look forward to hearing from you.

Hello,
I was diagnosed with a liposarcome in my right thigh in April. I had surgery in May to remove it. (I am 32 years old and have two small children as well) I went thorugh 36 rounds of radiation. I was also told by my orthopedic oncologist surgeon (he has been in the biz for 25 years and trained at Sloan Kettering) that there is no research showing that Chemo helps this type of sarcoma. I know mine was considered low grade even though less than 10% of the cells were round cell (hence requiring the radiation). I also sought another opinion from the same kind of doctor who said basically the same thing as my doctor except that he would offer Chemo. The radiaiton oncologist also agreed with my Dr. I have chosen not to do that. By doing the radiation my chances of it coming back (mainly into the lungs, this is where this type of cancer likes to go) was less than 20%. those are pretty good odds. I have remained positive ( I have my bad days most definetly) and believe in the power of the Almighty. I KNOW how hard this was and still is on my husband so I know what you are going through. Let me know if you ever want to talk. Take care and let me now how things are going. Anna

Thanks for you reply. I am glad to hear that things are going good for you. Do you have to have regular scans? (re: every three months) I am very confused, because I have read posts where people say that they were diagnosed with "low grade mixoid liposarcoma", but when I spoke with the pathologist at John's Hopkins, he told me that myxoid liposarcoma is always considered to be a stage/grade 2. For some reason I had called him to discuss the pathology report from the second surgery, and that is when the results of the first came up. Did you have just the one surgery? did they ever do a second to clear the margin? As you can see, I have a ton of questions, and probably always will. I will pray for you and your family. As a spouse, I feel so helpless at times. It is hard not to be able to help take this away. As a Mom, I cannot imagine how hard this has been on you. How old are your children? do they know anything? We explained the situation to our girls (kid terms that is) as best we could. We had to say something, because there were only so many times I could shut the door and cry. They could sense that something was wrong. It broke my heart to sit there with my husband and tell them. Of course they are kids, and really had no idea what we were talking about. Ever since we found out about my husband, we have always wanted the girls to know as little as possible. We want them to remain kids for as long as they can. We also figure, that we have not been given a sentence, so we are going to live our lives. Sure our journey is far from over, but I have learned to accept this, and place it into God's hands. This is all I can do. We have been married for 10 years, and it litterally takes my breath away to think of this life without him. Like you, I also have good days, and not so good days. I have spent many sleepless nights trying to make sense of this all. But I quickly learned that life was ticking away. I guess one never knows when there time will be, we just always assume/hope that it will be later rather than sooner. If you ever would like to chat, my email address is RMRMDR1@AOL.COM
Will keep you in our thoughts and prayers.
Rhonda

I am a 46 yr. old mother of 4 children and have a myxoid liposarcoma in the area just inner to my left knee.It is 5cmX5cmX8cm. It is deep and involves ligaments etc. of knee. My orthopedic oncologist and medical oncologist both agreed that in my case, I needed to have chemo (3 courses)to try and shrink the tumor before excision so that i have a better chance of mobility of my knee. I will have the radium implants at the time of surgery for I think 5 days of radiation directly to the site. Not sure if I will need more chemo after the surgery. I am trying to take one day at a time. My 1st chemo was 3 days long and I was hospitalized.I came home on Thanksgiving Day. I recieved ifosfomide and adriamycin. Both are pretty toxic. In fact, i am 1 week and 2 days post chemo and my hair is beginning to come out. That was a huge blow to me this a.m. in the shower. I feel that my doctor's have chosen the best tx. for me because of where the sarcoma is and the fact that if they don't get it 100% this time around, the next time may not be so treatable.I am recieving tx. at University Hospital in Syracuse, they have a good reputation. I live about 25 miles away so travel back and forth is not an issue.It's a tough time of year to feel so bad. I also had to take a leave from my job. I am an R.N. at a surgery center. Not to mention that I had to stop being a Brownie Leader because of decreased resistance to germs.

Rhonda, I was diagnosed with a low grade myxoid liposarcoma in the right thigh in February, 2004. On 2/10/04 my vastus lateralis and parts of two other muscles were removed at Stanford Univ. Med. Ctr. I had a post-surgical MRI in July and it did not show any residual cancer. On 12/3/04 the surgeon checked my unstable knee and the incision. He said that there isn't any way to fix my knee because so much was removed during surgery (muscle and ligaments). Now I am working harder to strengthen the remaining muscles. My tumor was deep in the muscle. The pathology report stated that the tumor was running throughout the entire muscle. Originally I was diagnosed with a lipoma (7/02). At that time the tumor was about the size of my fist. I had not noticed the lump because I was totally focused on my mother who was very ill (she passed away on 3/17/03). In November, 2003 I noticed that the lump had grown and it was causing me considerable pain when I walked more than 20 feet. My doctor ordered an MRI and I was referred to an orthepedic surgeon who referred me to Dr. David Mohler at Stanford. Dr. Mohler is an Orthopedic Oncologist Surgeon.

I will keep you, your husband, and your family in my special thoughts and prayers.

Hi, I just had surgery at Stanford with Dr Moehler two weeks ago for Mixoid liposarcoma in my R thigh. I am just learning about the disease and options, they are recommending radiation. How are you doing now? What kind of treatment did you have? Do you have confidence in Dr Mohler? Thank you for your response.

I am in Australia so I cant comment on Dr Moehler, but I wish you luck with your outcome.

My husband was diagnosed with Myxoid Liposarcoma in June 2006 in the right thigh also. His was 13 inches (33cm) in length and over 8 inches deep. After 5 weeks and 2 days of radiotherapy 5 days a week then 6 weeks recovery time, limb sparing surgery was done by Professor Peter Choong. The surgery was done in September 2006. Five days before Xmas we found out that the cancer has now spread to his buttocks, near his bowel, near his stomach, in his shoulder, in his pelvic region and has now entered the bone in his spine. He has started Doxorubicin chemotherapy as a palliative treatment only. Am hoping though that he may be one of the rare ones that are actually cured. You just never know.
Is there anyone else in the forums that are or have a partner that is at the same stage as my husband? Would like to know how you are doing so far.
Thanks for listening.
Mary :)

Hi Mary,
I am also a patient of Prof Choong with stage 4 metastatic myxoid liposarcoma 1st diagnosed in July 2005. My case is similar to your husbands. I am most interested to hear how your husband is going having started Dox chemo. I have not yet started but will probably mid next year.
Thanks
Caz.

My son 3 years ago was diagnosed with a malignant tumor to left thigh. My son had it excised and it was a size of an orange per his doctor. My son never had chemo or radiation just had to go every 3 months for 2 years for MRI then the 3rd year every 3 months with MRI alternating with CT scans. His was very low grade. He is now 18 and has been cancer free for 3 years. He is now every 6 months with CT scans. He was able to finish strong playing football and basketball his senior year. I am hearing all these stories online on chemo and my heart goes out to everyone and their families.

I wish everyone the best of luck. My son still has 2 more years to reach his new milestone of 5 years. God Bless and take care.

I was diagnosed on October 13, 2004 with myxoid liposarcoma in my right thigh. After insisting with my primary doctor that I needed a referal to a specialist becuase the area was getting larger. After the referal to a orthopedic surgeon specializing in oncology it was diagnosed that it was liposarcoma and very large. I had surgery on October 25th and I have just fininshed 30 rounds of radiation. My oncologist was on the fence at first about any sort of chemo but has changed his mind. I begin chemo this next week. (four rounds) One week on and two/three weeks off for the immune system to come back. The size of my turmor was 11.5 cm wide, 10.5 cm deep and 20.3cm long.
The surgeon saved my cyatic nerve and I am able to walk. I would welcome anyone to talk to me about recovery. I have tried many sources to discuss this type of cancer and this network was the only one that I found had a discussion board for others like me dealing with this type of cancer.

I was diagnosed with a mixoid liposarcoma in my right thigh in Nov 1999. I just had my 5 year checkup a few months ago and got the good news: no metastases, no recurrences. I was operated on (the entire semi-membranosous was removed - the tumor was 11 x 7 x5 cm) and received radiation. I was also told that chemo hadn't been shown to be successful and the doctor (at Mt. Sinai in Baltimore) felt the radiation was important because the tumor was large and the margins small (1 mm at one point). But still - I'm alive and kicking, so don't give up, folks!

I did have a very bad reaction to the radiation and have suffered from lymphedema and radiation fibrosis ever since. AFter years of searching for solutions, I found a doctor in Paris, Dr. Slyvia Delanian, who specializes in treating radiation fibrosis, using a combination of pentoxiflyllin, vitamin E, Bonefos and prednisone. I tried the first two for three years, and it really helped. I just started on the second two (while continuing on the first two.) For further information, either contact me or just type "treatment radiation fibrosis" into google. I wrote to her and she agreed to see me. It was wonderful to go to a doctor who specialized in treating radiation damage and not one who keeps telling me how grateful I should be to be alive (which I am, of course, but what has that got to do with anything?). I should say that I live in Germany, although I am an American. I just happened to be in the US the year it was diagnosed and treated.

In addition, I get manual lymph drainage (a very gentle massage to get the lymph flowing) Any of you who have lymphedema should try it if there is anyone in your area that does it (preferably covered by health insurance!)

Also, if you find it difficult to sit because the radiation fibrosis hardens the tissue on the back of your leg, try using a wheelchair cushion. There are some that allow you to adjust the amount of pressure. I even saw an inflatable one I could take along when I go out.

My father was diagnosed with liposarcoma 1 year ago. He had 2 surgery, and now he don't have metastases now. But the doctor is pessimistic because this type of cancer is very rare and the chemoterapy can't stop this monster. I am desperate and I don't know what to do. I don't know how long my father will live ...

In February of 2003 I discovered a sarcoma in my right thigh only mine was only about the size of a quarter. After three surgeries to get a good margin I underwent the radiation treatment you described of 33 radiation treatments. I have been cancer free since then with monitoring by MRI and chest x-rays. Unfortunately the radiation covered a large enough portion of my thigh to cause radiation fibrosis and secondary lymphedema. I have to wear compression stockings and a compression sleeve at night to manage the lymphedema. I have become much more health conscious and started exercising 3-4 times per week. I am thankful that chemotherapy was not necessary.

Rhonda. This is the first time I've used this site but I connected with your story as my husband was a healthy 31 yr old and was diagnosed with myxoid liposarcoma in his groin area. He underwent two surgeries in 1994. Had a reoccurence in his abdomen in 1997 and again in 2003, 2004 and this past Friday we have been told of yet another new tumor in the lymph nodes of his left leg. Unfortunately, if you read through info on sarcoma it is a "monster". He has undergone radiation a couple of times,but as you can see it has not helped. We too have been told chemo is not effective and we too have been told all we can do is "buy time". We live in Indiana and are on our way to MD Anderson in Texas for his upcoming surgery. Our doctors here in Indinapolis have all but given up on trying to contain it. My husband is strong willed and has a wonderful outlook, he just keeps on going. I try to keep a stiff upper lip and stay positive. We have battled this for 11 out of our 14 years of marriage. Stay strong, Love Him, Live Everyday to it's fullest, and PRAY! If you need to talk or have questions I understand. I'll keep your family in my prayers. Anita

HELLO MY NAME IS META AND I FOUND OUT AFTER GIVING BIRTH TO MY NEW BORN BABY BOY THAT I HAVE IT IN MY LEFT THIGH.... I AM SCARED I HAVE ALSO 2 BEAUTIFUL CHILDREN .. WE MOVED ROM VIRGINIA TO INDIANA. I HAVE TO SEE THE ORTHOINDY IN INDIANAPOLIS TOMORROW ACTUALLY TODAY. I DONT KNOW WHAT TO EXPACT... BESIDES I AM VERY SCARED DONT KNOW WHAT TO THINK... I WAS READING HERE SO MANY THINGS WHICH SCARED ME TO DEATH... I WASNT INFORMED HOW DANGEROUS IT IS.

CAN YOU TELL ME WHICH DOCTORS YOU HAVE SEEN? IN INDIANAPOLIS AND WHY DID HE HAD TO GO TO TEXAS? WHY COULDNT THEY HELP HIM IN INDIANAPOLIS. I AM SO SCARED I AM ABOUT TO PASS OUT.

MD Anderson is in Texas - they're one of the best of the best for sarcomas. I didn't go there, but if I get another recurrence I'm planning on going there next time.
I'm doing treatment right now for a mixoid liposarcoma that was in the side of my calf. It's no fun, but totally do-able. Try not to get too scared. Any cancer can be dangerous, but I like to remember the fact that liposarcomas are in a "spot". You can have surgery and get rid of that "spot". Other cancers, like leukemia, metastacized stuff, things in your belly, etc aren't as easy to remove. Comparatively, liposarcomas aren't that horrible really, IMO. Don't be too scared, you can do this.

Hi Meeta...I was diagnosed with a myxoid liposarcoma in 1972 right after the birth of my first child...i was scared to death! But I am still here...it was a tumor on my right thigh encased in a shell...three pounds of tissue and muscle were removed along with the cancer....and i still have my leg and my life and at that time...my doctor didn't really know what to do...my obstetrican told me to leave the lump; that it was jsut a fatty tumor and i would have a scar. I didn't listen...went to a surgeon. He put me in the hospital; operated on a Saturday! and then operated again...and then sent me home to my new baby. I ams till here. Actually I had no chemo and no radiation...if you want to talk more let me know...you will be ok...

I found out I had a mixoid liposarcoma in my RIGHT THIGH (!!!) right after I gave birth to my beautiful baby boy. The initial excision - the doctor's initially insisted that it 'must' be a lipoma and that i was a vain woman or a hypocondriac (!) - had been cut open and the encapsulation had been opened, and as a result it went into my bloodstream. When I was informed of my diagnosis, the prognosis was grim. My doctor literally said he was sorry but he was afraid (with the initial surgery being screwed up) that he had - and I quote - "signed (my)death warrant"..... that was over 7 years ago!!!!

Here's what you REALLY need to know:

1) Yes this cancer is extremely dangerous once it spreads, but it is a very non-agressive, slow moving cancer, so the chances are that if it's been caught early it will be easily contained and treated and that you will live for a very, very long time at a very, very high quality of life, even if they're unable to get it all.

2) Surgery is your BEST option. According to my Oncologist, who was one of only THREE doctors in the US who specialize in this type of cancer.... chemo 'feeds' this cancer, and radiation isn't really effective. Allow your doctor to do everything possible to get all the cancer in a wide excision - they'll tell you you may need an amputation. My doctor (YAW) performed a new surgery (I believe I was the first) that allowed for the leg to be saved. Essentially it's cutting the incision the opposite way they normally do. Seven years later, I'm still walking with my real leg... without a limp! Tell them to look it up! It's in the medical journals from 2002-2003 or somewhere around there.

Push through the pain of rehab therapy. Learn to walk right. You'll have a shark bite in the end, but if you use your leg correctly there's a good chance that will 'fill in' over the years - mine has.

3) This cancer is slow moving - did I say that already? Hear it again.

4) Because chemo and radiation are of limited or negative value, you really need to throw your full weight into prayer/medidation, diet, excercise, and supplements. I did. I'm supposed to be dead, remember (all through the bloodstream). I'm cancer free.
- prayer/meditation helps. Numerous studies at Harvard and John's Hopkins attest to statistically improved outcomes in double blind studies regardless of the faith of the prayers or the prayees. Whether you believe in anything or nothing, have someone do this for you.

- Go on an anti-cancer, limited carbohydrate, high fiber diet. Sugar feeds cancer. Meat based protein encourages cancer to grow, too. I went on a vegetarian, low glycemic diet with lots and lots and LOTS of veggies and low glycemic fruits (berries). I did a lot of juicing, salads, etc. We're talking more than 10 servings a day of each! The brighter the color, the higher the antioxidant and anticancer value of the nutrition.

- Excercise - do what you can as intensly as you can. You'll be in recovery for 6-10 weeks. It will take a LOT of time and effort to learn to walk, and then to learn to walk correctly. Don't forget to strengthen your core and arms. They'll atrophy or get close with all the bedrest. Studies have shown that the increase in body temperature and the raised metabolism of excercise slows or stops active cancer and helps prevent recurrences i nsome cases.

- I hate pills. But I took supplements anyway. reishi mushroom supplement was the best. Take the supplements for at least a year or two after being declared cancer free.

I'm including Dr. Sear's Protocol for you from his site... this, plus the reishi mushroom, selenium, and others..... really did make me feel a TON better.

Hi Rhonda, I'm Jordan and I was diagnosed with myxoid liposarcoma when I was seventeen. Mine was actually in my left ankle, and was roughly the size of a softball. It was wrapped around my achilles heel, and all of my other nerves and tendons, which made it tricky to get out without cutting through it all. When I went to see an oncologist, she recommended not to do the chemo, as it can cause other kinds of cancers down the road. I went through five weeks of radiation, which was a pain, because I had to drive from my home to Salt Lake, which is an eight hour drive all together, not including the doctor's visits. I was only a stage one, but I am still recieving MRI's and catscans every three months for the next two years.
My cancer appeared when I got pregnant at 16, because the pregnancy makes everything grow, tumors included. My son literally saved my life. I was told I'd had the cancer for a few years most likely, but liposarcoma in the limbs tends to be slow growing. I know if liposarcoma does spread, it goes to the lungs or the lymph nodes generally, because I get checked everytime I go. I have only been in remission for six months, but I am more grateful for the six months than you can imagine. So far, there has been no sign of it returning.
My doctor tried to be very optomistic and kind to me, and if you don't feel you are getting the same treatment I recommend going to another doctor. Your life is in their hands, so to speak, and you want to trust them.
I wish you and your husband the best of luck, as well as your children.

We just found out yesterday that my husband has myxoid lipomasarcoma. What a way to start the weekend! We won't be able to see the oncologist until Tuesday and I am crying every two hours and my kids wonder what is wrong with me. What I've read so far from other sites make it seen so terminal. We won't have any information until his check up and I'm going crazy.

Jordan- My husband had his tumor above his right ankle kinda like you, but his doctor removed it before doing any tests or scans because he thought it was another type of growth that was common. "A strange looking thing" he tells me after removing the tumor from my husband's leg on Monday. Not what I wanted to hear. They also said that they would let us know the results of the biopsy the following day, but we didn't get the news until yesterday. I'm so mad. I'm glad to know that you are recovering well. I wish you positive thoughts.

I want to know if any one tried alternative medicines to complement the radiation/chemotherapy? Did you change your diet and how. Is there a book or two that anyone can recommend?

I'm going crazy and want to help my husband beat this any way possible. I've bought flax seeds, flax oil, oxygen drops, blue green algea, green foods, calcium supplements, vitamin D, and switching our cooking oils and diet to help balance his body's ph level to be more alkaline. If anyone has tried alternative therapy or any information about it please let me know.

Thank you all for letting me share this with you, I don't know who to talk to. When you talk to people who have not experienced this they can only say that the are sorry to hear it. I myself had a ovarian tumor removed before having my first child and have been lucky that it was benign.

Lady Mac, read below for my experience with this. I went the alternative route because surgery is really the only truly effective option for the cancer of this type. A drastically changed my lifestyle and eating habits, and it was a world of good for me. Feel free to call me at any time.

I was diagnosed with myxoid liposarcoma in 1972 and am still here...will write more if you wish; just became a member of this site after doing more research on long-term diagnoses of this illness...am willing to talk...

I was diagnosed with myxoid liposarcoma in april, 2010. The doctors want to do 3 rounds of chemo and 2 of radiation before the surgery to remove it. I have been reading all of these posts as well as other articles and see that they all say chemo has no effect on these tumors. The doctors are telling me that it is because micro cells could escape from tumor and travel to other parts of the body, such as the lungs. I am scheduled for chemo on the 17th of may. Really scared and questioning this again. Any info would be greatly appreciated.

A little over two years ago my wife was diagnosed with myxoid liposarcoma in her right thigh. At the time it was a stage II tumor, 7 X 5 X 3 cm, <5% round cell, negative for necrosis, few mitotic figures, somewhat encapsulated. Even though it's a stage II tumor it is considered to be of a low grade. We were first diagnosed locally (we live in South Central Pa) but due to some of the treatment plans proposed, we sought a second opinion at Sloan Kettering in New York. Let me mention this, at the time my wife was diagnosed she was 18 weeks pregnant. The treatment plan presented to us locally had my wife aborting our baby and having some heavy duty radiation treatment immediately. Anyway, the Docs at Kettering made it very clear that termination of pregnancy and radiation was a "GROSS" overtreatment for this type of tumor and the only necessary treatment was another surgery providing a wide margin. Needless to say, we were in New York again three weeks later (actually our cancer free aniversary was May 5, two years) and my wife had the surgery, baby on board. The surgeon removed a 17 X 10 X 5 portion of her right thigh but she was home in 3 days (5 months later our daughter was born, healty and beautiful). She is cancer free and has very few residual problems with her leg with the only thing being a bit of numbness on her knee and a slight propensity for that ankle/calf to swell.

My advice to you is get to an experienced Sarcoma surgeon. Had we not sought out a second opinion just think of the consequences. These types of tumors are rare and not many surgeons or oncologist know how to treat them properly. If it doesn't feel right by all means go somewhere else! A good support network is important as is a positive outlook. Stay strong! God bless!!

I had a myoxide liposarcoma removed from my left calf in 2000 along with the entire soleus muscle. It was well defined, encapsulated, and about a 5cm ball. Both the oncologist and leg Dr agreed the chemo will not work. They suggested radiation to get the cells that might escape. They were back in forth between doing radiation before _really to shrink the tumor) or after the surgery. They decided after so the wound would heal better as radiated skin would not heal as fast if done before the surgery. After the surgery I decided against radiation as now they had to cover the entire incesion which was from knee to ankle. Their only reasoning was that it was standard procedure. But in my case it was small and low grade so I opted out to prevent further knee and ankle issues. I went throught 8 yearly exams of cat scans of the abdomen to chest and MRI on the lower leg. Still clean.... Not the same situation maybe but just letting know my experience and circumstances.

1) Yes this cancer is extremely dangerous once it spreads, but it is a very non-agressive, slow moving cancer, so the chances are that if it's been caught early it will be easily contained and treated and that you will live for a very, very long time at a very, very high quality of life, even if they're unable to get it all.

2) Surgery is your BEST option. According to my Oncologist, who was one of only THREE doctors in the US who specialize in this type of cancer.... chemo 'feeds' this cancer, and radiation isn't really effective. Allow your doctor to do everything possible to get all the cancer in a wide excision - they'll tell you you may need an amputation. My doctor (YAW) performed a new surgery (I believe I was the first) that allowed for the leg to be saved. Essentially it's cutting the incision the opposite way they normally do. Seven years later, I'm still walking with my real leg... without a limp! Tell them to look it up! It's in the medical journals from 2002-2003 or somewhere around there.

Push through the pain of rehab therapy. Learn to walk right. You'll have a shark bite in the end, but if you use your leg correctly there's a good chance that will 'fill in' over the years - mine has.

3) This cancer is slow moving - did I say that already? Hear it again.

4) Because chemo and radiation are of limited or negative value, you really need to throw your full weight into prayer/medidation, diet, excercise, and supplements. I did. I'm supposed to be dead, remember (all through the bloodstream). I'm cancer free.
- prayer/meditation helps. Numerous studies at Harvard and John's Hopkins attest to statistically improved outcomes in double blind studies regardless of the faith of the prayers or the prayees. Whether you believe in anything or nothing, have someone do this for you.

- Go on an anti-cancer, limited carbohydrate, high fiber diet. Sugar feeds cancer. Meat based protein encourages cancer to grow, too. I went on a vegetarian, low glycemic diet with lots and lots and LOTS of veggies and low glycemic fruits (berries). I did a lot of juicing, salads, etc. We're talking more than 10 servings a day of each! The brighter the color, the higher the antioxidant and anticancer value of the nutrition.

- Excercise - do what you can as intensly as you can. You'll be in recovery for 6-10 weeks. It will take a LOT of time and effort to learn to walk, and then to learn to walk correctly. Don't forget to strengthen your core and arms. They'll atrophy or get close with all the bedrest. Studies have shown that the increase in body temperature and the raised metabolism of excercise slows or stops active cancer and helps prevent recurrences i nsome cases.

- I hate pills. But I took supplements anyway. reishi mushroom supplement was the best. Take the supplements for at least a year or two after being declared cancer free.

I'm including Dr. Sear's Protocol for you from his site... this, plus the reishi mushroom, selenium, and others..... really did make me feel a TON better.

Dear Naomipoe
I like to talk to you regarding the liposarcoma. I was recently diagnosed with a liposarcoma low grade of the right thigh, and the more I read the more I believe I can treat this with ,yes the surgery and what your doctor recommended.
I hope you can answer me.
Evangelina

I admire your enthusiasm and breadth of knowledge on alternative remedies, but I don't think it's wise to advise people to avoid chemotherapy and/or radiation. Yes, both are incredibly toxic, but that is why they are a last resort not complimentary. I was 23 when I was diagnosed with a high-grade undifferentiated pleomorphic sarcoma (also called Malignant Fibrous Histiocytoma), which presented as a 7cm mass embedded in my right thigh. At the time, I was a vegetarian, living a healthy lifestyle in San Diego and studying for a Master's Degree in Chinese Medicine (acupuncture and herbology). So I know all the benefits of alternative medicine.

The problem with sarcomas in particular, is that we don't know much about them...there isn't the same investment in research and development of new therapies in sarcoma as compared to breast cancer or leukemia, so we aren't often presented with a "sarcoma-specific" chemo drug, but one that was perhaps designed for ovarian cancer for example. After my first diagnosis, I underwent radical resection surgery at Memorial Sloan Kettering by one of the best surgical oncologists in the country. The surgeon got clean margins, all looked good. So when I was given the choice as to whether to get radiation or not, I opted out, thinking about the damage it would do to my femur and ovaries. That "opting out" was what possibly contributed to a devasting recurrence and metastasis to my lungs. When my oncologist presented me with the options, even though I knew that Ifosfamide with mesna at the doses they were suggesting might just kill me, or bring me close to death, I took that risk. Because that's what we have to do.

The key is trusting completely in your oncologist, and of course having faith that God will see you through. After multiple blood transfusions, infections, weight loss, etc etc and all the horros of chemo, I vowed I would never allow chemo to enter my system again. But it did kill the cancer cells in my lungs. And I lived almost another 2 years without cancer in my life. When it came back a third time, my oncologist essentially told me to make arrangements, say goodbye, and prepare for death. Because in 1 month, a tumor the size of a lemon developed in my lungs in the space where they had previously done a wedge resection. My doctor said he would like to try a regiment of gemcitabine and taxotere. It was tempting to just say no, but then I thought of all the suffering that people have undergone before me when all the odds were against them. I thought about my family, and the sacrifices they had made to give me a second, third chance. I thought about the pain that they would endure if I gave up and just tried to live "cleanly", adhering to special diets and supplements while the cancer continued to ravage my body. So I had faith in my doctor and in the process, and gave my body over to medicine and ultimately to god. And it worked. It might not be the same for others, but in my case the "shot in the dark" chemo worked and completely killed the tumor. After having a full lobectomy and completing the gem/tax regiment, it's been 4 years with clean scans. Of course I have ongoing issues as a result of the chemo and radiation, I lost the ability to have children, I have constant gastrointestinal problems, I have weakness and fatigue, and so it goes on...but I am alive. My purpose now is to make the most of this life, ailments and all.

Just like my decision to go all in with harsh chemo treatments worked for me, your choice to go the "natural" route worked for you. I admire you for the faith in that path and your courage to take that risk, but caution against your suggesting others to follow you. Your recommendations are common sense ones to anyone wanting to live a clean, healthy life and shouldn't be viewed as an alternative to medical treatments, but as complimentary to give your body and mind the best possible fighting chance it has against this disease.

It is so easy to find the grief turn into anger when the doctor tells you the bad news... that if it spreads you're out of luck. The doctor is telling you the truth.... this is a truth you need to hear. And then to act on. Don't get mad, get active. That's what I did! Here's what you need to know:

1) Yes this cancer is extremely dangerous once it spreads, but it is a very non-agressive, slow moving cancer, so the chances are that if it's been caught early it will be easily contained and treated and that you will live for a very, very long time at a very, very high quality of life, even if they're unable to get it all. My doctor - an expert in this kind of cancer - said said that even in the worst case of metastizing cancer, I'd have 20 to 30 years of 'perfect health' on the experiential level before the cancer created illness enough to really do a number on me. Think of that. At 25 (when I was dealing with this, with young kids) that meant that even at worst case, this wouldn't really even start to ruin my quality of life until I was 45-55. Time enough to see my kids grow...

2) Surgery is your BEST option. According to my Oncologist, who was one of only THREE doctors in the US who specialize in this type of cancer.... chemo 'feeds' this cancer, and radiation isn't really effective. Honestly, I'd opt against radiation. The risk of developing a radiation-induced cancer later in life outweighs the 'benefits' of the radiation on the cancer. In the thigh, this should be treatable with surgery alone. I had it through the bloodstream due to a surgical error in the initial incision, and over 7 years later, I am CANCER FREE.

3) Because chemo and radiation are of limited or negative value, you really need to throw your full weight into prayer/medidation, diet, excercise, and supplements. I did. I'm supposed to be dead, remember (all through the bloodstream). I'm cancer free.
- prayer/meditation helps. Numerous studies at Harvard and John's Hopkins attest to statistically improved outcomes in double blind studies regardless of the faith of the prayers or the prayees. Whether you believe in anything or nothing, have someone do this for you.

- Go on an anti-cancer, limited carbohydrate, high fiber diet. Sugar feeds cancer. Meat based protein encourages cancer to grow, too. I went on a vegetarian, low glycemic diet with lots and lots and LOTS of veggies and low glycemic fruits (berries). I did a lot of juicing, salads, etc. We're talking more than 10 servings a day of each! The brighter the color, the higher the antioxidant and anticancer value of the nutrition.

- Excercise - do what you can as intensly as you can. You'll be in recovery for 6-10 weeks. It will take a LOT of time and effort to learn to walk, and then to learn to walk correctly. Don't forget to strengthen your core and arms. They'll atrophy or get close with all the bedrest. Studies have shown that the increase in body temperature and the raised metabolism of excercise slows or stops active cancer and helps prevent recurrences i nsome cases.

- I hate pills. But I took supplements anyway. reishi mushroom supplement was the best. Take the supplements for at least a year or two after being declared cancer free.

I'm including Dr. Sear's Protocol for you from his site... this, plus the reishi mushroom, selenium, and others..... really did make me feel a TON better.

I too had a myxoid liposarcoma 6 lbs tumor (took my bum and thigh muscles too) removed January 2010...I was diagnosed last september and couldnt believe I had cancer.
I think the comment Naomi made about "shark bite" is hilarious because that's what me and my husband call my left leg...it looks ugly but I have my own leg that I can walk on - I need a cane for stability when I'm out and about.... I'm still in the phase of being xrayed and scanned every 3 months but so far so good. I did have pre-op 25 radiation treatments to make sure they killed every bit of this cancer - I have incision healing problems but they are better than being dead from cancer....keep strong everyone...you can fight it and so can I

I was just diagnosed this past week Septemember 1. 2010. went for CAT amd MRI's yesterday
It is located in my upper right thigh I have not had any symptoms had surgery biopsy on the 28th of August and path report said above dx. I am so very scared and hope I am doing the right things for this cancer. I have been referred to a Surgeon experienced in Soft tissue sarcoma and am getting mapped for radiation before surgery as the tumor is so close to my femure artery. the tumor is over 9 cm.
Please some one can you offer me advise and maybe a little peace? I am 52 female.

cpat, I just found out yesterday that I have myxoid liposarcoma in my left thigh. I have been referred to the University of Michigan Multidisciplinary Sarcoma Clinic (I live in Ann Arbor, MI). I'm also very scared. I don't feel like there is anything wrong with me so I'm really in shock and denial that I can possibly have cancer. I take comfort in knowing that I live in the best time in history, in terms of medical science, for something like this to happen to me. It's thoughts like this that keep me from crying non-stop all day. I hope your treatment goes well.

I just found out 1 week ago that I have a myxoid liposarcoma in my right thigh. ( 48 yr old female) It's fairly small, thankfully , but like you , Jim, I'm totally in shock that I now have cancer. I have this huge anxiety and fear of the unknown ;what to expect with radiation and surgery ( the thought terrifies me) , and how it will impact my future health. I'm really grateful for sites like this that I feel I can connect and hear about how other people are dealing with this. Good luck to you all!

I had a liposarcoma on my lower inner right thigh when I was 35-I will be 68 next month have use of my leg after surgery and radiation eliminated the cancer. have the shark bite,radiation burnt skin and painful leg swelling but no other troubles with it.

Hi,
I'm glad to hear you made it through surgery. Your case sounds very familiar to my own.
I was diagnosed at age 45 with a myxoid/round cell liposarcoma of the left thigh in Dec of 2009.

I had a radical resection done on Dec 22, 2009. My tumor measured 4 x 4 cm.
It was superficial (actually located in the fat, external to my thigh muscle).
The pathology said it was 20% round cell in a myxoid background. My doctors say that I have a very good chance of long term survival, some say about 70-80%, others have told me about 85% (they never seem to be consistent).

Once my wound was healed I underwent 30 rounds of radiation therapy, everyday for 6 weeks. Atfer Rad TX I started Chemo at Moffitt Cancer Center in Tampa, FL.I had 5 rounds of MAI Chemo. (Doxorubicin, Ifosfamide and Mesna.) This type of chemo is given as a inpatient and takes 4 or 5 days.

My doctors said that this particular type of sarcoma (myxoid/round cell) usually responds very well to chemotherapy. They said that the round cells were more susceptible to the effects of chemo than many other kinds of Sarcoma. At least that was some good news!
I have read that a combination of Doxorubicin and Ifosfamide have shown to be the most effective chemo regimen for this kind of liposarcoma.

So, now it's Feb 22, 2011 and I have had another round of scans (CT chest-abd-pelvis and the MRI on my left thigh)and all is negative for any new disease.

I guess that makes me a survivor, 14 months NED!!
I am still very nervous about this coming back. It's been just over one year since surgery and I feel fine now, it's the anxiety and fear of the unkown future that haunts me, just like everyone else.

How are things going for you?? Did your docs recommend Chemo? I'm assuming they will be running the same Ct & MRI scans on you just like me, every 3 months.

Kelly your situation sounds alot like my husbands....he is 45 and had surgery last week and recovering well he is being treated at ucla the doc wants to do radiation and chemo Do you mind me asking where you had your treatments done and with what doctor? Thanks Debbie

I wanted to let you and the other recent post know that you be just fine after having sarcoma. About 2 1/2 yrs ago I was diagnosed with a tumor a bit over 9cm pretty big in my right thigh. I too was in shock, got bloodwork all the time and nothing showed. I started having a raised thigh(looked swollen) and alot of pain. Prior, I had numbness in my feet a bit and hard to get up off the floor. I kept telling my dr(she said nothing was wrong). If I wasnt persistent in taking matters into my own hands I wouldnt be here. I did chemo, then surgery, and two months of radiation(and went every day after work). Turns out Im having more issues now then back then due to scar tissue. But...Im in remission get tested every 3 months for the first 2 yrs now I can start going every 6 months. Depending on the size of the tumor, you can live a long life(Id check into all your options and make sure to get a dr. that knows about sarcoma) Luckily I live in Tampa and Moffit Hospital has a sarcoma clinic. There are only a few in the entire country-MD Anderson/in New York and I forgot the other one. Please try not to worry and keep us posted on your recovery.

My husband has a ten-centimeter lesion that they think is a myxoid sarcoma. He got a biopsy this morning. The results should be known by the end of the week. He's too young for this to be happening, and our babies are too young for this to be happening, and I'm so scared. But reading this helps.

I constantly search for information regarding this type of cancer, and just came across this site today. If anyone is interested, I would like to share the facebook site I created to keep friends and family updated on her condition, and to help spread awareness of sarcoma cancer. It is: http://www.facebook.com/home.php?#!/pages/Barbaras-Battle/160604370625831

Barbara passed away Monday, October 25, 2010, just over a month ago. We battled this cancer for exactly four years from the month she was diagnosed with it. I want to be able to let others know what she went through, and what WE went through, over the past four years. I would love to have more people join the facebook page that I plan to keep posting on to help spread awareness, and keep in touch with all of the people that supported us.

I wrote a very long letter and posted it, but it didn't post for some reason and I didn't save it anywhere. I'm not going to re-write it now, but if anyone wants any information, you can get in touch with me through the facebook page. I have a lot of information on what she went through, and what our family went through during this four year battle.

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